Exploring the psychosocial status and lived experiences of haemophilia carriers: a comprehensive mixed methods study

S Badagabettu; A Kurien; V Lakshmi; JA Noronha; LS George; S Govindan; DD Shroff

doi:10.2478/jhp-2025-0002

Abstract

Abstract Introduction

Haemophilia carriers (HCs) face psychosocial challenges, including emotional distress, health concerns, and pregnancy-related issues. Understanding their needs is crucial for optimal healthcare support. This study examined the emotional impact on haemophilia carriers (HC).

Methods

This mixed methods study employed a sequential explanatory design, beginning with a survey in the first phase, followed by a qualitative analysis in the second phase. HCs resident in Karnataka, fluent in Kannada or English, aged between 20 and 50 years, and having at least one child with haemophilia or being the daughter of a father diagnosed with haemophilia, and attending the haemophilia treatment centre at the Medical College and Hospital in Manipal, were eligible to participate.

Results

Quantitative analysis encompassed psychosocial variables such as stress, coping, and social support; there was no significant association between stress-coping (r=−0.13, p=0.303), coping-social support (r=0.206, p=0.099), and stress-social support (r=0.216, p=0.084). However, families who had been dealing with haemophilia for a longer duration exhibited better social support (r=0.265, p=0.033). Participants with higher stress and anxiety scores were selected for qualitative interviews. Fourteen in-depth interviews were conducted, revealing six key themes.: acceptance, social support, financial security, family history, birth control, and haemophilia burden. Carrier mothers deal with acceptance issues and inherit feelings of guilt, while the burden on affected children and maternal emotional distress were palpable.

Conclusion

This research offers valuable insights into the psychosocial wellbeing of HCs in India. It underscores the importance of holistic care, genetic education, and support systems to improve the overall quality of life for this population. By recognising the complex interplay of factors affecting HCs and their families, this study advocates for a comprehensive approach to healthcare that considers not only the medical aspects but also psychological and social dimensions among HCs.

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References

1. Srivastava A, Santagostino E, Dougall A, et al. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia 2020: 26(Suppl 6): 1–158. doi: https://doi.org/10.1111/hae.14046.
2. World Federation of Hemophilia. Report on the Annual Global Survey 2021. October 2022. Available from https://www1.wfh.org/publications/files/pdf-2324.pdf.
3. Available from https://elearning.wfh.org/elearning-centres/hemophilia/?_gl=1&ast;rjb9fv&ast;_ga_7974KH9LH5&ast;MTc0MDc1NTU1NS4xLjEuMTc0MDc1NTU3MS4wLjAuMA.
4. Hirayama AB, Silva AKCD, Rocha JS, Roberti MDRF. Prevalence of symptoms in hemophilia carriers in comparison with the general population: a systematic review. Hematol Transfus Cell Ther 2019; 41(4): 349–355. doi: https://doi.org/10.1016/j.htct.2019.02.006.
5. Lewis C, Skirton H, Jones R. Can we make assumptions about the psychosocial impact of living as a carrier, based on studies assessing the effects of carrier testing? J Genet Couns 2011; 20(1): 80–97. doi: https://doi.org/10.1007/s10897-010-9327-8.
6. Ivankova NV, Creswell JW, Stick SL. Using mixed-methods sequential explanatory design: From theory to practice. Field Methods 2006; 18(1): 3–20. doi: https://doi.org/10.1177/1525822X05282260.
7. Creswell JW, Creswell JD. Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. 4th edn. Newbury Park: Sage; 2017.
8. Elbatarny M, Mollah S, Grabell J, et al. Normal range of bleeding scores for the ISTH-BAT: adult and pediatric data from the merging project. Haemophilia 2014; 20(6): 831–835. doi: https://doi.org/10.1111/hae.12503.
9. Punt MC, Blaauwgeers MW, Timmer MA, Welsing PMJ, Schutgens REG, van Galen KPM. Reliability and feasibility of the self-administered ISTH-Bleeding Assessment Tool. TH Open 2019; 29;3(4):e350–e355. doi: https://doi.org/10.1055/s-0039-3400483.
10. Carver CS. You want to measure coping but your protocol's too long: Consider the Brief COPE. Int J Behav Med 1997; 4: 92–100. doi: https://doi.org/10.1207/s15327558ijbm0401_6.
11. Tang WPY, Chan CWH, Choi KC. Factor structure of the Brief Coping Orientation to Problems Experienced Inventory in Chinese (Brief-COPE-C) in caregivers of children with chronic illnesses. J Pediatr Nurs 2021; 59: 63–69. doi: https://doi.org/10.1016/j.pedn.2021.01.002.
12. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The Multidimensional Scale of Perceived Social Support. Journal of Personality Assessment 1988; 52: 30–41. doi: https://doi.org/10.1207/s15327752jpa5201_2.
13. Trejos-Herrera AM, Bahamón MJ, Alarcón-Vásquez Y, Vélez JI, Vinaccia S. Validity and reliability of the Multidimensional Scale of Perceived Social Support in Colombian adolescents. Psychosocial Intervention 2018; 27(1): 56–63. doi: https://doi.org/10.5093/pi2018a1.
14. Teddlie C, Tashakkori A. Foundations of Mixed Methods Research: Integrating Quantitative and Qualitative Approaches in the Social and Behavioral Sciences. Thousand Oaks, CA: Sage; 2009.
15. Fetters MD, Tajima C.. Joint displays of integrated data collection in mixed methods research. Intl J Qual Methods 2022; 21: 1–13. doi: https://doi.org/10.1177/16094069221104564.
16. Guetterman TC, Fetters MD, Creswell JW. Integrating quantitative and qualitative results in health science mixed methods research through joint displays. Ann Fam Med 2015; 13(6): 554–561. doi: https://doi.org/10.1370/afm.1865.
17. Saviolo-Negrin N, Cristante F, Zanon E, Canclini M, Stocco D, Girolami A. Psychological aspects and coping of parents with haemophilic child: a quantitative approach. Haemophilia 1999; 5: 63–8. doi: https://doi.org/10.1046/j.1365-2516.1999.00213.x.
18. von der Lippe C, Frich JC, Harris A, Solbrække KN. “It was a lot tougher than I thought It would be”. A qualitative study on the changing nature of being a hemophilia carrier. J Genet Couns 2017; 26(6): 1324–1332. doi: https://doi.org/10.1007/s10897-017-0112-9.
19. Wiedebusch S, Pollmann H, Siegmund B, Munthny FA. Quality of life, psychosocial strains and coping in parents of children with haemophilia. Haemophilia 2008; 14 (5): 1014–22. doi: https://doi.org/10.1111/j.1365-2516.2008.01803.x.
20. Beeton K, Neal D, Watson T, Lee CA. Parents of children with haemophilia – a transforming experience. Haemophilia 2007; 13: 570–9. doi: https://doi.org/10.1111/j.1365-2516.2007.01494.x.
21. Canclini M, Saviolo-Negrin N, Zanon E, Bertoletti R, Girolami A, Pagnan A. Psychological aspects and coping in haemophilic patients: a case-control study. Haemophilia 2003; 9: 619–24. doi: https://doi.org/10.1046/j.1365-2516.2003.00807.x
22. Sheridan N, Thompson B, Lichten L, Coleman K, Sidonio R Jr. The emotional experience of mothers of children with haemophilia: maternal guilt, effective coping strategies and resilience within the haemophilia community. Haemophilia 2023; 29(2): 513–520. doi: https://doi.org/10.1111/hae.14746.
23. Knol M, Voskuilen MA, Holterman F, KluinNeleman JC, Meijer K. Reproductive choices and obstetrical experience in Dutch carriers of haemophilia A and B. Haemophilia 2010; 17: 233–6. doi: https://doi.org/10.1111/j.1365-2516.2010.02351.x.
24. Mauser Bunschoten EP, van Houwelingen JC, Visser EJS, van Dijken PJ, Kok AJ, Sixma JJ. Bleeding symptoms in carriers of hemophilia A and B. Thromb Haemost 1988; 59(3): 349–352.
25. Myrin-Westesson L, Baghaei F, Friberg F. The experience of being a female carrier of haemophilia and the mother of a haemophilic child. Haemophilia 2013; 19(2): 219–24. doi: https://doi.org/10.1111/hae.12026.

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Authors

S Badagabettu

sulochana.k@manipal.edu

Manipal College of Nursing, Manipal Academy of Higher Education, Manipal, India
A Kurien

Manipal University College Malaysia, Bukit Baru, Malaysia
V Lakshmi

Prasanna School of Public Health, Manipal Academy of Higher Education, Manipal, India
JA Noronha

Manipal College of Nursing, Manipal Academy of Higher Education, Manipal, India
LS George

Manipal College of Nursing, Manipal Academy of Higher Education, Manipal, India
S Govindan

Dept of Basic Medical Sciences, Manipal Academy of Higher Education, Manipal, India
DD Shroff

Melaka Manipal Medical College (Manipal Campus), Manipal Academy of Higher Education, Manipal, India